Objective: To explore the experiences and perceptions of barriers of parents and family members of patients with cleft lip and palate in accessing cleft services in remote northwest Nigeria.
Design: Face-to-face semi-structured audio recorded interviews were used to obtained qualitative textual data. Thematic analysis using interpretative descriptive techniques was employed to understand the participants' lived experiences with barriers and accessibility to cleft services.
Setting: Participants were from Sokoto, Kebbi and Zamfara states in remote northwest, Nigeria.
Participants: Consisted of 22 caregivers (17 parents and 5 extended family members) were purposively sampled between 2017 and 2020.
Main outcome measures: Barriers experienced while accessing cleft services were identified during thematic analysis.
Result: Over three quarter of the respondents had patients with both cleft lip and palate and without any previous family history (n = 20). About two-thirds of the participants (n = 15) were females. Most of the interviews were conducted before the surgeries (n = 15).
Five themes emerged: lack of information, financial difficulty, misrepresentation from health workers, multiple transportation and previous disappointment.
Conclusions: Areas of poor awareness, misinformation from primary health care workers, financial hurdles, multiple transportation logistics and others were identified. Aggressive broadcasting of information through radio, timely treatment and collaboration with influential religious leaders were emphasized. Support, grants and subsidies from government and voluntary agencies are encouraged to mitigate the huge out of pocket cost of cleft care in the region.
Keywords: accessibility of health services; barriers; cleft lip and palate; experiences; family caregivers; parents; qualitative research; rural; subsaharan Africa; treatment; vulnerable population.